DÄ internationalArchive17/2021Wishes and Needs at the End of Life: Communication Strategies, Counseling, and Administrative Aspects

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Wishes and Needs at the End of Life: Communication Strategies, Counseling, and Administrative Aspects

Communication strategies, counseling, and administrative aspects

Dtsch Arztebl Int 2021; 118: 303-12. DOI: 10.3238/arztebl.m2021.0141

Welsch, K; Gottschling, S

Background: Managing the last phase of life properly, i.e., taking care that a patient’s wishes are respected at the end of life and beyond, is very important and can relieve the patient and his or her family of unnecessary burdens.

Methods: This review is based on guidelines, reviews, meta-analyses, selected publications, and the authors’ own experiences from everyday clinical practice.

Results: Most patients want frank information from their physicians about their condition at all times over the course of their treatment, from the moment of diagnosis to the end of their life. This has no lasting adverse effects, but rather enables patients to take decisions that are appropriate to their stage of disease. Early integration in palliative care can improve patients’ quality of life, symptom control, and mood. In helping to manage the last phase of life, the physician often serves as a provider of impulses, or else determines which other types of professional should counsel or support the patient. Patients should be enabled to issue directives that reflect their wishes, as well as to choose representatives who are allowed to speak for them. Consideration should also be given to the patient’s emotional legacy, e.g., letters or video messages with personal content.

Conclusion: In the care of patients with life-limiting diseases, more attention should be paid to the management of the last phase of life. Palliative-care physicians can take over this task from other medical disciplines, and early integration in palliative care is recommended.

LNSLNS

In principle, it is always an important matter to make provisions for one’s own death, to consider the various questions associated with it, and to put one’s thoughts in writing. Death is not always brought on by a progressive illness that gives the sufferer the time to deal with the subject thoroughly.

The physician’s task of counseling patients about death becomes especially important in the case of a progressive illness or one that is already in an advanced stage. In such situations, the physician is often the patient’s main interlocutor, whose professional role establishes a relationship of trust.

This article provides an overview of the final matters that must be considered in the last phase of an adult patient’s life. These final matters include everything that ensures the patient’s wishes will be respected up to the moment of death and beyond it, as well as everything that can support the patient’s family as they deal with their loss. The topic will be covered broadly here, and therefore, inevitably, some individual aspects cannot be discussed in great depth.

Learning objectives

This article should enable the reader to:

  • understand the effect of candid information (once the patient has agreed to receiving it) and the fact that it does not harm the patient or the family as long as it is delivered appropriately.
  • have an overview of the instructions the patient should communicate and the provisions that he or she should make.
  • understand that the early integration of palliative care improves patients’ quality of life and does not shorten their life.

Prerequisites for settling final matters

For many patients, receiving open and honest information from their physicians about their diagnosis and prognosis is a prerequisite for settling matters relating to the end of their lives. The question of truth at the bedside, i.e., whether physicians should be honest with their patients or not, has been discussed and debated in medicine for many years (1). Frank and open patient information was long considered harmful (2). There is now, however, a global trend toward more openness and honesty in discussions between physicians and their patients (2), partly because of the altered role of the patient. Respect for patient autonomy and the need to obtain the patient’s informed consent for all medical measures imply the need for comprehensive information from the physician (e1). Review articles on openness and truthfulness about medical diagnoses and prognoses have shown that the vast majority of patients with cancer and other life-limiting illnesses, along with their families, want to be informed truthfully and comprehensively. There is no evidence that openness causes any long-term harm; rather, positive effects have actually been shown (Table 1, [7, e2]). The withholding of true information sometimes causes serious problems for patients and their families, including anxiety and confusion (8). Patients want more openness even in countries and cultures where comprehensive information is not the norm (9). All patients should be asked about their preferences, as there is also a small group of patients who will cope better with not knowing (10). When assessing the patient’s wishes in this regard, the physician should pay attention not only to the patient’s verbal replies, but also to all other signals, to be sure that the desire for open information is not being expressed merely to conform with supposed social expectations, while the patient is in fact emotionally ill-equipped to deal with it. The physician can usually correctly gauge the patient’s readiness to receive candid information from his or her personality, nonverbal signals, and emotional responses to partial information, as well as from replies to the physician’s questions over the course of the discussion.

Review articles on preferences about truth at the bedside
Table 1
Review articles on preferences about truth at the bedside

Today, the question is hardly ever whether to tell the patient the truth; rather, the question is how (11). Yet the truth is still not told in many cases, for various reasons. Many physicians fear inducing or worsening depressive symptoms, destroying hope, shortening the patient’s life by initiating palliative-care measures, or saying something that will turn out to be factually wrong because the prognosis is uncertain. All of these fears have been shown to be ungrounded (12). Discussions about diagnosis and prognosis, or about death and dying, still require high communicative competence from the physician (e3). As medical education has largely ignored the development of communicative skills to date, some physicians feel poorly prepared for such discussions and try to avoid them (13). One way to help physicians become more competent in breaking bad news is to use communication models such as the SPIKES model (Table 2); further communication tips are summarized in Table 3. The time factor is another important consideration. The physicians treating the underlying illness often lack the time to interrupt their clinical routine to talk with the patient, even though good communication, in the overall context of treatment, actually tends to save time and prevent misunderstandings. The early integration of palliative care can also be helpful. Palliative care specialists lighten the treating physicians’ task by bringing their communicative skills, time resources, and complementary substantive competence into the process.

The SPIKES model
Table 2
The SPIKES model
Communication tips
Table 3
Communication tips

For many years, palliative medicine simply meant the care of dying patients in the last days of their lives. Increasing efforts are now being made to offer patients palliative care as early as possible in the course of a life-limiting illness, e.g., within two months of the diagnosis of metastatic disease, according to the German AWMF-S3 guideline for lung cancer (14, 16). Palliative medicine can complement the treatment of the underlying illness by the primary medical discipline, or it can be the sole therapeutic approach, depending on the stage of disease. Studies have shown that patients receiving palliative care along with care from a primary medical discipline have a better quality of life and a lower risk of developing depressive symptoms; they also use fewer health-care resources, giving rise to lower expenses overall (18). Moreover, some studies have shown that patients receiving palliative care tend to live longer, even several months longer (Table 4). Palliative medical consultation and care give patients an early opportunity to consider “plan B”: what should be done if the treatment stops being effective? Patients can deal with such stress-inducing questions much more easily when they are still in relatively good condition and can think of palliative care as an option that might be needed much later on. For the settling of final matters, palliative medicine offers a multiprofessional team giving patients and their families help with their physical, emotional, social, and spiritual needs. The team includes doctors, nurses, and professionals from the psychosocial field, e.g., psychologists, social workers, and creative therapists (music therapy, art therapy) (14).

Early integration of palliative care; data from a Cochrane analysis, a systematic review and meta-analysis, and a recent study involving more than 20 000 patients
Table 4
Early integration of palliative care; data from a Cochrane analysis, a systematic review and meta-analysis, and a recent study involving more than 20 000 patients

Final matters—what is important?

Physicians should sensitize, motivate, and empathically support patients in establishing their preferences for treatment in various hypothetical clinical situations, and in documenting these preferences in case they become unable to communicate them personally (14). Discussions between the physician and the patient can be supplemented by written information; the involvement of other persons with authorized custodial responsibility is recommended (14). eTable 1 contains an overview of the appropriate documentation.

Overview of important documents
eTable 1
Overview of important documents

Studies have shown that most patients want to discuss end-of-life matters (27, e13). If a patient does not actively request such a discussion, this should not be interpreted as a decision not to deal with the issue; rather, the physician should actively and empathically ask about the patient’s needs in this respect, early on in the course of disease, and repeatedly if necessary (14). By doing so, the physician can ensure that the patient sets appropriate goals and maximizes the chance of dying in the way that he or she would want (e13). On the other hand, the physician must also be prepared to accept that the patient cannot (yet) face the (whole) truth, reacting, for example, with denial (14). The patient must not be put under pressure (5).

Well-informed patients make different decisions from incompletely informed patients. Patients who estimate their remaining lifespan too optimistically tend to request aggressive, invasive, and medically futile treatments rather than what palliative care has to offer (28). Up to 38% of patients receive treatments at the end of their lives with little or no expected effect (29). This is due, among other things, to physicians’ fear of informing patients fully. Physicians must keep the principle of doing no harm in mind (worsening the patient’s quality of life and, in some situations, unintentionally shortening the patient’s life by overtreatment at the end of life without any medical indication). A further major factor is that both physicians and patients very often estimate the remaining lifespan much too optimistically (Table 5). The use of standardized prognostic instruments (e.g., the Palliative Performance Scale [a modification of the Karnofsky Index], 32) can improve assessment of the prognosis (33).

Publications on Evaluation of the Quality of Life
Table 5
Publications on Evaluation of the Quality of Life

The burden on the patient’s family is lightened by knowing what the patient wants to be done in case he or she can no longer communicate. Aside from an advance directive on medical treatment, certain elementary practical matters can be addressed as well: does the patient want uninterrupted company, or periods of rest in between? To be touched, or not? To hear music in the hospital room, or not? Who should be told of the situation, and who should not be told? Certain matters relating to the patient’s last days should also be discussed with the patient and the family and are best documented in writing: How does the patient wish to be cared for? At home, on a palliative care ward, in an inpatient hospice? Most people want to die at home (34), but this is not always possible (overburdening, fears, or work commitments of the family). If care cannot be provided at home during the last days, it is important to discuss an appropriate “plan B.”

In principle, the more information the patient has made available in advance and the more he or she has communicated his wishes on various matter, the lighter the burden on the patient’s family. Even a statement from the patient that certain things are of no importance can afford the family great relief. Many family members are deeply troubled, for example, by the need to plan the funeral according to the patient’s wishes without knowing what these are. This can lead, in the worst case, to guilt feelings that promote emotional complications in the grieving process.

Spiritual topics

Another responsibility of the physician is to know and take consideration of the patient’s spiritual convictions (14), ensuring, for example, that religious practices of personal importance can still be carried out (e16), as spiritual well-being averts despair at the end of life (e17). This can be accomplished in a simple discussion or with a more sophisticated instrument, such as the semistructured interview known as SPIR (e18):

S – spiritual and faith convictions

P – the position and role of these convictions in the life of the patient

I – integration in a spiritual or religious group or community (church, mosque, synagogue, temple, etc.)

R – the role of the physician: how should the physician address the patient’s spiritual expectations and problems?

Last will and testament

The writing of a will is another final matter that must be settled properly. A survey in Germany revealed that just under 74% of the persons surveyed aged 18 and older had not written a will or made any agreement as to succession (35). This situation often leads to disputes, to unfair distribution of property, and to loss of property (36). Of course, encouraging a patient to write a will is not the physician’s special responsibility; nonetheless, the physician can provide an important impulse by bringing this sensitive matter to the patient’s attention.

Writing a will is often a reasonable thing to do (eBox 2). In principle, a will must be in the individual’s own handwriting and should bear his or her name, date of birth, location, date, and signature on every page. If the patient is no longer able to write a will out by hand, the help of a notary must be obtained (e19). A will can be deposited with the local district court for a small fee so that it cannot be lost.

Will and inheritance checklists
eBox 2
Will and inheritance checklists

Especially when minor children are affected, it is very important to settle certain matters in advance. For example, a single parent with sole custody who is suffering from a life-limiting illness can try to establish, by means of a testamentary provision, what person will be responsible for the care of the child (or children) after his or her own death. In such situations, it is important to state a valid reason why, for example, the other currently non-custodial parent is not suitable for taking over custody. It is useful for the person who is to take over custody to sign the provision as well. In the best case, the matter will be considered before the parent’s death by the youth welfare office, which can provide help even at this stage. In these and similar situations, competent professional advice is always desirable.

Digital legacy

More and more aspects of everyday life are now to be found in the digital world. According to a law that has been in effect in Germany since 2018, the heirs also inherit the deceased person’s digital property. All online content becomes accessible to them after the individual’s death, just as analog documents do (37). For a Facebook-account, for example, several possibilities exist: it can be canceled (if the access data are not available after death, only immediate relatives equipped with a certificate of inheritance can do this), or it can be maintained further, e.g., as a memorial website. A dead person’s digital trace can also be altered in complex ways (e.g., advertising data for a law office can be deleted, while a person’s scientific data can be retained) (37).

One can make provisions for one’s own digital legacy with a power of attorney that remains valid after one’s death. Provisions for the digital legacy can also be included in the will (37).

A study from England showed that, in 2017, the question of digital legacies received no attention at all in the setting of hospice care. 96% of the persons surveyed stated that they had never discussed a digital legacy with a patient (38).

Special situations

Minors as family members of terminally ill patients

Minor children are often not included in physicians’ discussions with the family or in the grieving process, and this “non-information” can cause them additional distress (e20, e21). Moreover, they may receive less attention than usual from other family members who are preoccupied with their own grief. Children absolutely need to be informed; they have the right to be included, to ask questions, and to grieve along with the adults (14). Children, like adults, often can only come to terms with a loss when they can grasp it, in the most literal sense. No child is too young to be with a dying person, to see a dead person, or to participate in a ritual such as a funeral. Due attention must be paid, however, to the child’s developmental state and special needs, which must be considered on an individual basis (eTable 2). The exclusion of children, supposedly for their own good, tends rather to reflect the inability of the adults to cope with the situation (parents and other family members, but also the treating personnel). Children of severely ill parents have an elevated risk of mental illness that can be lowered by giving them age-appropriate information (e22). For such situations, specially trained therapists are recommended, as a preventive measure as well (14). Ways to find qualified specialists or regional support offerings for children of a parent with cancer can be found in the References (e23, e24).

Conceptions of death in children and adolescents of different ages and developmental stages
eTable 2
Conceptions of death in children and adolescents of different ages and developmental stages

Creating an emotional legacy

In addition to the legal provisions, orderly settling of the inheritance, and clarification of the patient’s wishes and conceptions, a so-called emotional legacy can be created that will be highly valued by those left behind (adults as well as children). Such legacies can be of many kinds, including a farewell letter, a video message, or a postcard with a brief greeting. Even if the things written in it have been said before, their being written down in this way lends them a new and different significance; but it is particularly when certain things are hard to say that an emotional legacy provides an opportunity to do so by another route. Many patients are very grateful for this idea and for the raising of the option in discussion. There are also more specific opportunities for support, e.g., dignity-centered therapy, as described by Chochinov, in the hands of specially trained therapists (39). This type of therapy was developed specifically for persons at the end of life; it is a manual-based, short-term intervention in which the therapist and the patient, in a joint discussion, create a legacy consisting of important messages from the patient. Illustrative questions include: Are there particular things that your family should remember about you? Do you have concrete recommendations that you would like to give your family to prepare them for the future? Once this document has been generated, the patient agrees to its release, and it is determined how the legacy will be given to family (for example, it can be delivered to them by the treating physician, by the patient himself/herself, etc.). Studies have shown that this type of biographical work heightens feelings of dignity and significance (e25) and lessens sadness and depression in the participating patients (40).

The Universitätsklinikum Bonn has initiated a “family audio book” as a pilot project for young parents who are in palliative care because of cancer. The patient’s life story is recorded as an audio book for the children and other relatives. The project is accompanied by scientific research concerning the effect of the family audio book on the course of treatment and the grieving process (flyer at [e26]). Even without professional equipment, valuable legacies can be created, for example, a mother’s lullaby recorded as an audio file on a mobile telephone.

Fulfilling the patient’s last wishes

The physician can speak with the patient about his or her last wishes and, depending on the circumstances, assign the task of fulfilling them to particular people. Many palliative care units have “wish fulfillment teams” that try to do this, with the aid of donated funding. There are also various supraregional offerings of this type (e27, e28, e29). Many families are not informed about this option, do not think about it, or need an initial impulse from the physician or other treating professional.

Often, it is the physician’s manner of dealing with the truth that first gives the patient an opportunity to settle final matters. Aside from topics within the scope of the physician’s professional counseling, he or she also has a steering function. The physician should identify important elements and see to it that the appropriate experts work with the patient in an interdisciplinary, multiprofessional approach. In the real world, palliative topics are often avoided for too long; physicians too rarely address the issue of settling final matters, and patients and their families lose valuable time.

Fundamental attitudes toward life and death
eBox 1
Fundamental attitudes toward life and death

Conflict of interest statement
Prof. Gottschling has received reimbursement of travel expenses and/or lecturing or consulting fees from the following companies: Archimedes, Baxter, Bionorica, Bionorica Ethics, Boehringer Ingelheim, Grünenthal, Kyowa Kirin, Lilly, Mundipharma, Novartis, Pfizer, Roche, Spectrum Therapeutics, Teva, Tilray, Vertanical.

Dr. Welsch has received reimbursement of travel expenses and/or consulting fees from Kyowa Kirin.

Both authors state that they have no conflict of interest relating to the present article.

Manuscript submitted on 19 September 2020, revised version accepted on 27 January 2021.

Translated from the original German by Ethan Taub, MD.

Correspondence address
Prof. Dr. med. Sven Gottschling
Zentrum für altersübergreifende Palliativmedizin und
Kinderschmerztherapie
Universitätsklinikum des Saarlandes
Kirrberger Str. 100
D-66424 Homburg/Saar, Germany
sven.gottschling@uks.eu

Cite this as:
Welsch K, Gottschling S: Wishes and needs at the end of life: communication strategies, counseling, and administrative aspects. Dtsch Arztebl Int 2021; 118: 303–12. DOI: 10.3238/arztebl.m2021.0141

Supplementary material

eReferences:
www.aerzteblatt-international.de/m2021.0141

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Gottschling S, Welsch K: Übers Sterben reden. Frankfurt: Fischer 2019.
e9.
Finke C: Finanzplaner Alleinerziehende. Geld und Recht: Das steht Ihnen zu. Berlin: Stiftung Warentest 2019.
e10.
Kristeller JL, Rhodes M, Cripe LD, Sheets V: Oncologist assisted spiritual intervention study (OASIS): patient acceptability and initial evidence of effects. Int J Psychiatry Med 2005; 35: 329–47 CrossRef MEDLINE
e11.
Balboni TA, Balboni M, Enzinger AC, et al.: Provision of spiritual support to patients with advanced cancer by religous communities and associations with medical care at the end of life. JAMA Intern Med 2013; 173: 1109–17 CrossRef MEDLINE PubMed Central
e12.
Feldmann KH, Janik J: Spirituelle Verfügung. 2016. www.palliativ-schulung.com/2018/10/25/spirituelle-verfuegung-muster-aus-deutschland/ (last assessed on 20 August 2020).
e13.
Kirk P, Kirk I, Kristjanson LJ: What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 2004; 328: 1343 CrossRef MEDLINE PubMed Central
e14.
Glare P, Virik K, Jones M, et al.: A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 2003; 327: 195–8 CrossRef MEDLINE PubMed Central
e15.
Hole B, Salem J: How long do patients with chronic disease expect to live? A systematic review of the literature. Clin Med (Lond.) 2016; 16 (Suppl 3): s32 CrossRef MEDLINE PubMed Central
e16.
Peng-Kneller S: Ansätze ärztlicher Spiritual Care. Praxis 2017; 106: 1339–43 CrossRef MEDLINE
e17.
McClain CS, Rosenfeld B, Breitbart W: Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients. Lancet 2003; 10: 1603–7 CrossRef
e18.
Frick E, Weber S, Borasio GD: SPIR – Halbstrukturiertes Interview zur Erhebung einer „spirituellen Anamnese“. 2002. www.palliativpsychologie.de/wp-content/uploads/SPIR.pdf (last assessed on 6 December 2020).
e19.
Wacke A: Testament. Kapitel 51. In: Wittwer H, Schäfer D, Frewer A (eds.): Handbuch Sterben und Tod. Heidelberg: Springer 2020; 356–60 CrossRef
e20.
Mück C, Heußner P: Wie sag ich’s meinem Kinde? Gesprächsführung mit Kindern. Kapitel 11.3. In Jünger J (eds.) Ärztliche Kommunikation. Stuttgart: Schattauer 2018; 289–92.
e21.
Gottschling S: Wie erklärt man Kindern den Tod? Angew Schmerzther Palliativmed 2011; 3: 36–9.
e22.
Haagen M, Romer G: Kinder körperlich kranker Eltern. Göttingen: Hogrefe 2007.
e23.
Deutschen Arbeitsgemeinschaft für Psychosoziale Onkologie e.V. www.dapo-ev.de (last assessed on 20 January 2021).
e24.
Flüsterpost e. V. Mainz. Untersützung für Kinder krebskranker Eltern. https://kinder-krebskranker-eltern.de/infomaterial-zum-thema-krebs/link-tipps-zum-thema-krebs/ (last assessed on 20 January 2021).
e25.
Houmann LJ, Rydahl-Hansen S, Chochinov HM, Kristjanson LJ, Groenvold M: Testing the feasibility oft he dignity therapy interview: adaption for the Danish culture. BMC Palliative Care 2010; 9: 21 CrossRef MEDLINE PubMed Central
e26.
Universitätsklinikum Bonn: Flyer Familienhörbuch. www.familienhoerbuch.de/wp-content/uploads/2018/06/Flyer-zum-Download.pdf (last assessed on 19 August 2020).
e27.
Glückskämpfer e. V.: Wir für krebskranke Erwachsenen und Angehörige. www.glueckskaempfer.de (last assessed on 20 January 2021).
e28.
Herzenswünsche e. V.: Verein für schwer erkrankte Kinder und Jugendliche. www.herzenswuensche.de (last assessed on 20 January 2021).
e29.
Der Wünschewagen. Letzte Wünsche wagen. www.wuenschewagen.de (last assessed on 20 January 2021).
Centre of Palliative Care and Pediatric Pain,Saarland University Medical Center and Saarland University Faculty of Medicine, Homburg/Saar: Dr. rer. med. Katja Welsch, Prof. Dr. med. Sven Gottschling
Review articles on preferences about truth at the bedside
Table 1
Review articles on preferences about truth at the bedside
The SPIKES model
Table 2
The SPIKES model
Communication tips
Table 3
Communication tips
Early integration of palliative care; data from a Cochrane analysis, a systematic review and meta-analysis, and a recent study involving more than 20 000 patients
Table 4
Early integration of palliative care; data from a Cochrane analysis, a systematic review and meta-analysis, and a recent study involving more than 20 000 patients
Publications on Evaluation of the Quality of Life
Table 5
Publications on Evaluation of the Quality of Life
Fundamental attitudes toward life and death
eBox 1
Fundamental attitudes toward life and death
Will and inheritance checklists
eBox 2
Will and inheritance checklists
Overview of important documents
eTable 1
Overview of important documents
Conceptions of death in children and adolescents of different ages and developmental stages
eTable 2
Conceptions of death in children and adolescents of different ages and developmental stages
1.Shahidi J: Not telling the truth: circumstances leading to concealment of diagnosis and prognosis from cancer patients. Eur J Cancer Care 2010; 19: 589–93 CrossRef MEDLINE
2.Sisk B, Frankel R, Kodish E, Harry Isaacson J: The truth about truth-telling in American medicine: a brief history. Perm J 2016; 20: 15–219 CrossRef MEDLINE PubMed Central
3.Hagerty RG, Butow PN, Ellis PM, Dimitry S, Tattersall MH: Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol 2005; 16: 1005–53 CrossRef MEDLINE
4.Hancock K, Clayton JM, Parker SM, et al.: Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med 2007; 21: 507–17 CrossRef MEDLINE
5.Parker SM, Clayton JM, Hancock K, et al.: A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style and timing of information. J Pain Symptom Manage 2007; 34: 81–93 CrossRef MEDLINE
6.Van der Velden NCA, Meijers MC, Han PKJ, van Laarhoven HWM, Smets EMA, Henselmans I: The effect of prognostic communication on patient outcomes in palliative cancer care: a systematic review. Curr Treat Options Oncol 2020; 21: 40 CrossRef MEDLINE PubMed Central
7.Davison SN: End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol 2010; 5: 195–204 CrossRef MEDLINE PubMed Central
8.Fallowfield LJ, Jenkins VA, Beveridge HA: Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 2002; 16: 297–303 CrossRef MEDLINE
9.Sullivan RJ, Menapace LW, White RM: Truth telling and patient diagnoses. J Med Ethics 2001; 27: 192–7 CrossRef MEDLINE PubMed Central
10.Han PK: The need for uncertainty: a case for prognostic silence. Perspect Biol Med 2016; 59: 567–75 CrossRef MEDLINE PubMed Central
11.Ankowitsch E: Wahrheit am Patientenbett: Nicht ob, sondern wie. Dtsch Arztebl 2014; 111: A-162.
12.Mack JW, Smith TJ: Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol 2012; 30: 2715–7 CrossRef MEDLINE
13.Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP: SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000; 5: 302–11 CrossRef MEDLINE
14.Leitlinienprogramm Onkologie (Deutsche Krebsgesellschaft, Deutsche Krebshilfe, AWMF): Palliativmedizin für Patienten mit einer nicht-heilbaren Krebserkrankung, Langversion 2.1, 2020,AWMF-Registernummer: 128/001OL. www.leitlinienprogramm-onkologie.de/leitlinien/palliativmedizin/ (last assessed on 29 August 2020).
15.Clayton JM, Hancock KM, Butow PN, et al.: Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 2007; 186 (S12): 77–105 CrossRef MEDLINE
16.Leitlinienprogramm Onkologie (Deutsche Krebsgesellschaft, Deutsche Krebshilfe, AWMF): Prävention, Diagnostik, Therapie und Nachsorge des Lungenkarzinoms, Lang-version 1.0,2018, AWMF-Registernummer: 020/007OL. www.leitlinienprogramm-on-kologie.de/Lungenkarzinom.98.0.html (last assessed on 20 August 2020).
17.Haun MW, Estel S, Rücker G, et al.: Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev 2017; 6: CD011129 CrossRef MEDLINE PubMed Central
18.Kavalieratos D, Corbelli J, Zhang D, et al: Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA 2016; 316: 2104–14 CrossRef MEDLINE PubMed Central
19.Sullivan DR, Chan B, Lapidus JA, et al.: Association of early palliative care use with survival and place of death among patients with advanced lung cancer receiving care in the Veterans Health Administration. JAMA Oncol 2019; 5: 1702–9 CrossRef MEDLINE PubMed Central
20.Bundesministerium der Justiz und für Verbraucherschutz: Vorsorgevollmacht. www.bmjv.de/SharedDocs/Downloads/DE/Service/Formulare/Vorsorgevollmacht.html (last assessed on 7 August 2020).
21.Bundes­ärzte­kammer: Empfehlungen der Bundes­ärzte­kammer und der Zentralen Ethikkommission bei der Bundes­ärzte­kammer. Umgang mit Vorsorgevollmacht und Patientenverfügung in der ärztlichen Praxis. Dtsch Arztebl 2013; 110: A-1580.
22.Bundesministerium der Justiz und für Verbraucherschutz: Patientenverfügung. www.bmjv.de/SharedDocs/Publikationen/DE/Patientenverfuegung.pdf?__blob=
publicationFile&v=38 (last assessed on 7 August 2020).
23.in der Schmitten J, Lex K, Mellert C, Rothärmel S, Wegscheider K, Marckmann G: Implementing an advance care planning program in German nursing homes:
results of an inter-regionally controlled intervention trial. Dtsch Arztebl Int 2014; 111: 50–7 VOLLTEXT
24.Deutsche interprofessionelle Vereinigung – Behandlung im Voraus Planen
(DiV-BVP) der Deutschen Gesellschaft für Allgemeinmedizin (DEGAM), Deutsche Gesellschaft für Palliativmedizin (DGP), Deutsche Gesellschaft für Pneumologie und Beatmungsmedizin (DGP), Deutsche Gesellschaft für Anästhesiologie und
Intensivmedizin(DGAI), Deutsche Interdisziplinären Vereinigung für Intensiv- und Notfallmedizin (DIVI): Ambulante patienten-zentrierte Vorausplanung für den
Notfall. Ein Leitfaden aus Anlass der Covid-19-Pandemie. 2020 www.dgpalliativ
medizin.de/images/Ambulante_patientenzentrierte_Vorausplanung_fuer_den_
Notfall_LEITFADEN_20200409_final.pdf (last assessed on 6 December 2020).
25.Gehrt M, Mohr M, Weber M: 2011 PALMA – Patientenanweisung für lebenserhaltende Maßnahmen. www.unimedizin-mainz.de/fileadmin/kliniken/palliativ/Dokumente/PALMA-Formular_Vers.3.2.pdf (last assessed on 17 August 2020).
26.Bundesministerium der Justiz und für Verbraucherschutz: Betreuungsverfügung www.bmjv.de/SharedDocs/Downloads/DE/Service/Formulare/Betreuungsverfuegung.html (last assessed on 17 August 2020).
27.Hagerty RG, Butow PN, Ellis PA, et al.: Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 2004; 22: 1721–30 CrossRef MEDLINE
28.Weeks JC, Cook EF, O’Day SJ, et al.: Relationship between cancer patients’
predictions of prognosis and their treatment preferences. JAMA 1998; 279: 1709–14 CrossRef MEDLINE
29.Cardona-Morrell M, Kim J, Turner RM, Anstey M, Mitchell IA, Hillman K: Non-beneficial treatments in hospital at the end of life: a systematic review on
extent of the problem. Int J Qual Health Care 2016; 28: 456–69 CrossRef MEDLINE
30.White N, Kupeli N, Vickerstaff V, Stone P: How accurate is the ‚Surprise Question’ at identifying patients at the end of life? A systematic review and meta-analysis. BMC Med 2017; 15: 139 CrossRef MEDLINE PubMed Central
31.White N, Reid F, Harris A, Harries P, Stone P: A systematic review of predictions of survival in palliative care: how accurate are clinicians and who are the experts. PLoS One 2016; 11: e0161407 CrossRef MEDLINE PubMed Central
32.Baik D, Russell D, Jordan L, Dooley F, Bowles KH, Masterson Creber RM: Using the palliative performance scale to estimate survival for patients at the end of life: a systematic review of the literature. J Palliat Med 2018; 21: 1651–61 CrossRef MEDLINE PubMed Central
33.Downing M, Lau F, Lesperance M, et al.: Meta-analysis of survival prediction with palliative performance scale. J Palliat Care 2007; 23: 245–52 CrossRef MEDLINE
34.Deutscher Hospiz- und Palliativverband: Wissen und Einstellungen der
Menschen in Deutschland zum Sterben – Ergebnisse einer repräsentativen
Bevölkerungsbefragung im Auftrag des DHPV. 2017. www.dhpv.de/tl_files/public/Aktuelles/presseerklaerungen/3_ZentraleErgebnisse_DHPVBevoelkerungsbefragung_06102017.pdf (last assessed on 17 August 2020).
35.Deutsches Forum für Erbrecht: Haben Sie ein Testament errichtet oder einen
Erbvertrag geschlossen? www.de.statista.com/statistik/daten/studie/2313/umfrage/testament-oder-erbvertrag-vorhanden/ (last assessed on 19 August 2020).
36.Klinger BF, Maulbetsch: Mein Testament: Die letzten Dinge klug und richtig regeln. München: C.H. Beck 2016.
37.Wende H: Digitaler Nachlass – wie wir präventiv Regelungslücken vermeiden. Schmermedizin 2019; 35: 54–6 CrossRef
38.Coop H, Marlow C: Do we prepare patients for their digital legacy? A survey of
palliative care professionals. Palliat Med 2019; 33: 114–5 CrossRef MEDLINE
39.Chochinov HM: Würdezentrierte Therapie – Was bleibt – Erinnerungen am Ende des Lebens. Göttingen: Vandenhoeck & Ruprecht 2017 CrossRef
40.Chochinov HM, Kristjanson LJ, Breitbart W, et al.: Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Lancet Oncol 2011; 12: 753–62 CrossRef
e1.Bublak R: Wann sollen Ärzte die Wahrheit sagen? Patientenautonomie in der Onkologie. CME 2012; 9: 40–1 CrossRef
e2.Davison SN, Simpson C: Hope and advance care planning in patients with end stage renal disease: qualitative intervie study. BMJ 2006; 333: 886 CrossRef MEDLINE PubMed Central
e3.Schildmann J, Schildmann E: Nichts als die Wahrheit? Zur Aufklärung und Therapieentscheidungsfindung bei unheilbar kranken Patienten in der Onkologie. Der Onkologe 2009; 15: 957–63 CrossRef
e4.Buckman RA, Kason Y: How to break bad news—A guide for health care professionals. University of Toronto Press 1992 CrossRef
e5.Keller M: Patientenzentrierte Kommunikation in der Onkologie. IMABE 2013; 20: 267–76.
e6.Salmon P, Young B: Core assumptions and research opportunities in clinical communication. Patient Educ Couns 2005; 58: 225–34 CrossRef MEDLINE
e7.Schmid Mast M, Kindlimann A, Langewitz W: Recipients‘ perspective on breaking bad news: how you put it really makes a difference. Patient Educ Couns 2005; 58: 244–51 CrossRef MEDLINE
e8.Gottschling S, Welsch K: Übers Sterben reden. Frankfurt: Fischer 2019.
e9.Finke C: Finanzplaner Alleinerziehende. Geld und Recht: Das steht Ihnen zu. Berlin: Stiftung Warentest 2019.
e10.Kristeller JL, Rhodes M, Cripe LD, Sheets V: Oncologist assisted spiritual intervention study (OASIS): patient acceptability and initial evidence of effects. Int J Psychiatry Med 2005; 35: 329–47 CrossRef MEDLINE
e11.Balboni TA, Balboni M, Enzinger AC, et al.: Provision of spiritual support to patients with advanced cancer by religous communities and associations with medical care at the end of life. JAMA Intern Med 2013; 173: 1109–17 CrossRef MEDLINE PubMed Central
e12.Feldmann KH, Janik J: Spirituelle Verfügung. 2016. www.palliativ-schulung.com/2018/10/25/spirituelle-verfuegung-muster-aus-deutschland/ (last assessed on 20 August 2020).
e13.Kirk P, Kirk I, Kristjanson LJ: What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 2004; 328: 1343 CrossRef MEDLINE PubMed Central
e14.Glare P, Virik K, Jones M, et al.: A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 2003; 327: 195–8 CrossRef MEDLINE PubMed Central
e15.Hole B, Salem J: How long do patients with chronic disease expect to live? A systematic review of the literature. Clin Med (Lond.) 2016; 16 (Suppl 3): s32 CrossRef MEDLINE PubMed Central
e16.Peng-Kneller S: Ansätze ärztlicher Spiritual Care. Praxis 2017; 106: 1339–43 CrossRef MEDLINE
e17.McClain CS, Rosenfeld B, Breitbart W: Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients. Lancet 2003; 10: 1603–7 CrossRef
e18.Frick E, Weber S, Borasio GD: SPIR – Halbstrukturiertes Interview zur Erhebung einer „spirituellen Anamnese“. 2002. www.palliativpsychologie.de/wp-content/uploads/SPIR.pdf (last assessed on 6 December 2020).
e19.Wacke A: Testament. Kapitel 51. In: Wittwer H, Schäfer D, Frewer A (eds.): Handbuch Sterben und Tod. Heidelberg: Springer 2020; 356–60 CrossRef
e20.Mück C, Heußner P: Wie sag ich’s meinem Kinde? Gesprächsführung mit Kindern. Kapitel 11.3. In Jünger J (eds.) Ärztliche Kommunikation. Stuttgart: Schattauer 2018; 289–92.
e21.Gottschling S: Wie erklärt man Kindern den Tod? Angew Schmerzther Palliativmed 2011; 3: 36–9.
e22.Haagen M, Romer G: Kinder körperlich kranker Eltern. Göttingen: Hogrefe 2007.
e23.Deutschen Arbeitsgemeinschaft für Psychosoziale Onkologie e.V. www.dapo-ev.de (last assessed on 20 January 2021).
e24.Flüsterpost e. V. Mainz. Untersützung für Kinder krebskranker Eltern. https://kinder-krebskranker-eltern.de/infomaterial-zum-thema-krebs/link-tipps-zum-thema-krebs/ (last assessed on 20 January 2021).
e25.Houmann LJ, Rydahl-Hansen S, Chochinov HM, Kristjanson LJ, Groenvold M: Testing the feasibility oft he dignity therapy interview: adaption for the Danish culture. BMC Palliative Care 2010; 9: 21 CrossRef MEDLINE PubMed Central
e26.Universitätsklinikum Bonn: Flyer Familienhörbuch. www.familienhoerbuch.de/wp-content/uploads/2018/06/Flyer-zum-Download.pdf (last assessed on 19 August 2020).
e27.Glückskämpfer e. V.: Wir für krebskranke Erwachsenen und Angehörige. www.glueckskaempfer.de (last assessed on 20 January 2021).
e28.Herzenswünsche e. V.: Verein für schwer erkrankte Kinder und Jugendliche. www.herzenswuensche.de (last assessed on 20 January 2021).
e29.Der Wünschewagen. Letzte Wünsche wagen. www.wuenschewagen.de (last assessed on 20 January 2021).